Butterfly rash

[DaleDiva]

Is the rash associated with Lupus an actual rash? To me a rash is raised, spotty and/or itchy but what I am noticing is that my cheeks (facial!!) are flushed, either like I am too warm or I have been too heavy on the blusher. What do other people have?

[Danielle2419]

When i experienced the rash it was formed on my cheeks and over my nose and had a flush to it but also appeared like a spotted rash it wasnt itchy it didnt hurt it looked like i was blushing apart from the fact it crossed over my nose.

[Dumpypug]

Hi, The rash I get spreads across both cheeks, and feels hot and sometimes itchy. It feels like my cheeks are burning.

x

[luppychick]

Mine is a across my nose. A rash that Is always there and gets raw and sore, weepy when I am in a flare. It the only physical visual thing that shows am sick that's how friends and family can tell that Iam unwell when the butterfly comes out.

Luppychick x

[bethsuejane]

Mines like yours, very flushed, hot and tight feeling but no rash. Only when I'm in a flare, very pale at other times. X

[ribitribi]

I always had red cheeks but when on the sun the skin starts to feel like burning and it becomes more red. It feels like when you are sunburned actually. I am using sunscream day and night because sun and most kind of lights are effecting me.

I am always redish..with flare or not.

xx

[DaleDiva]

Thanks all. People have been commenting that I look flushed.... it does feel warm to touch

[Sher78]

Not necessarily raised like a rash, it's different with different people, malar can just present itself as a 'blushing' effect, as it did with me prior 2 diagnosis (was the only time I had the malar rash & touch wood, not had it since!) & I've also known others 2 have the redness & heat but nothing else.

[larissa]

Thats what happens to me , red and hot over nose and cheeks when i start feeling unwell x

[DaleDiva]

I have a medical background, to me a rash is a raised, itchy, supparating mess!

This flushing/rash is new but is accompanied by an increase in joint pain... Damn!

[grannyjogger]

A red flushed triangle on each cheek and across the nose and a round red blob on my chin. No raised spots or itching, just hot and red. Much reduced after the Plaquenil kicked in six+ months ago but I've noticed recently that it is flaring up again, although not quite as red and hot as before. Seems like its different for everyone, although with some features in common - just like the symptoms of this range of autoimmune diseases.

[max1979]

Yes the rash is the lupus logo as i call it - wolf like - as Lupus is Latin for wolf.

[Barnclown]

Yes, my version of this /butterfly rash is a deep pink/red burning flush over the nose and cheeks with no raised spots or itch, which is almost always worse in the late afternoon/evening, and flares up if I am extra warm and/or emotional. So this question really interests me, thanks dalediva!

At my last rheumy clinic a few weeks ago, the rheumy told me the simultaneous erythromelalgia & raynauds burning redness I get every day, regardless of weather temperature,nin my feet/hands/ears could be considered a version of the sort of hot flushes some women get during perimenopause & menopause (I have never had these hot flushes, and have been menopausal for years now). Rheumy also said, in my case this burning redness could evolve into vasculitis

The thing is, my version of malar rash tends to flare up the same time my EM/RP flushes flare up. So, I've been figuring this overlap of rash & flushes is just me showing typical SLE overlaps in conditions. But if anyone has other theories I'm all ears......probably I should start a new question/post asking about this....

[wsjkcj1 in reply to Barnclown]

Hi Barnclown,

I know this is an old post but I recently started having this rash. My Rheumy ruled out Lupus and diagnosed me with Sjogren's and now RA a few years ago. In past flares, I've got the hot flashes and flushed feeling for several days but this time I've had it for a week now and when I got hot inside a warehouse my face became very red and in the same shape as the butterfly rash as you described your face has. It lasted a few days even after I was no longer hot so I was concerned but then it lightened up and was almost gone till today when it returned after I ate some oatmeal. Do you know if this rash is only associated with Lupus or can it happen with Sjogren's also? Not sure if I need to have my Rheumy do more test or not. These autoimmunes all seem to run together and share symptoms.

[Barnclown in reply to wsjkcj1]

I think you're asking a really good question! My reaction on reading your reply is to urge you to copy it and post it as a new question on forum...there are several v well informed sjogrens patients here now who will hopefully see your post & give great replies.

4 years on from my reply, above, rheumatology says this is my malar rash, and also that i do have small vessel vasculitis which especially is affecting my extremities (including my face)

You're right: these immune dysfunction & connective tissue disorder conditions do overlap...i hope i live long enough to see the "taxonomy" & diagnosis of these illnesses clarified...i think the next 25 years will see a big "correction"

Take care 😘🍀

[wsjkcj1 in reply to Barnclown]

I posted it to the Lupus forum. didn't think about the Sjogren's. I'll do that too. I really hope you are right about it all being corrected. It's so confusing that even Dr's don't really know.

[Barnclown in reply to wsjkcj1]

Thanks: just found your post.

Only a suggestion: if you can edit the heading to include the word sjogrens (e.g. To something like: butterfly rash with sjogrens?) i think the knowledgeable sjogrens patients here will be more likely to spot your question & be attracted to it

[Chapter]

I was introduced to Lupus with a bad rash - it started in my eyes and then it spent the next 7 months all over my face, neck and chest. It was hot, burning, itchy, cracking, scaley skin, that was barely controlled with prednisone, but finally was stopped when Plaquenil kicked in. I tried to cut back on Plaquenil as per doctors instructions, but when I felt my eyes starting to burn and itch again I went back to full dose. Now it seems under control - but every afternoon/evening I usually have bright red rash that crosses over nose settles on checks and, like you granny jogger, a red chin. This burns and is hot to touch. If I am in a vehicle for any length of time, shopping, or sitting to close to window any skin showing - neck, chest, face - goes bright red like sunburn. Takes several hours to fade away. It is an uncomfortable feeling but way better than the rash I started this journey with.

[DaleDiva]

Thanks everyone, very interesting and just for the record I am sat here with 2 lovely pink cheeks a bit like Looby Loo

[whisky]

My rash appears then goes also can be very hot also my scalp burns and hair falls out nothing i do seems to help

[Helly72]

Hi all, thanks for this question/answer stream, it is really helpful. I get two bright red patches, bit like I have gone mad with blusher, or stage make up. The only other skin symptoms are tiny bubble blisters full of fluid that pop when itched and the colour changes due to Raynauds.

[stretch]

before knowing it was lupus, in my late teens...that bloody hot reddish/purple stinging face had cost me a LOT of missing out on social life,love life,summers,drinking alcohol and even cost me the opportunity to go on a great adventure with a friend from school who had moved away,but came back to visit me by surprise which caused my face to be even worse and had already taken any social confidence

away.i was living at home with mum and i could have gone with him if it was not for my face......he became a very wealthy property developer in the cayman islands...whilst i stayed indoors at home skint....cruel cruel cruel cruel lupus !........and that was nothing to what then happened to my body and brain. i would say to those of you who feel similar about your face that i did.....do not let it WASTE your enjoyment of social/work life and seek a cover up cream or treatment. the internet should be great to find out. as a male i could not wear make up, and then,before internet it was hard to find any products. try not to let it silently gnaw away at your thoughts and emotions and then you find yourself not going to places cos you feel uncomfortable in your face.